We are the others. Our children are the “other” children and we are the “other” parents. There is no getting around it.
I ran into a co-worker that I had not worked with for years the other day, as she is now a stay-at-home mom, and usually just works weekends. As we caught up on kids and life, it came up that my daughter had a nut allergy.
While she tried to empathize and discussed school strategies at her kid’s schools, etc., she mentioned that even she was relieved when those “other” kids were not in her kid’s sports groups so she didn’t have to worry about what she packed for snacks. I know she did not mean to offend me, but in my mind I had her in a headlock.
And while I continue to read all the food allergy forum posts on Facebook, I keep noticing these reoccurring themes of frustration and anxiety from the food allergy parents. I am not quite sure where to start on what they/we are frustrated about. It seems like we are a small group of scared parents fighting against a world that essentially does not want to be inconvenienced by having to make any accommodations for our children.
A Community Divided
There is a well-documented study on the increased prevalence of children with food allergies being food bullied in the Journal of Pediatrics. I have not seen any studies on bullying of food allergy parents but I would certainly argue that we are bullied as well. Who are we bullied by?
The media and general public, schools and administration, other parents. We are accused of causing our child’s allergies, liking the extra attention the health issues bring, being hysterical, and my personal favorite, hyperventilating parenting. That phrase came from an idiotic editorial I read this week after the LEAP study was released and published in the New England Journal of Medicine.
This study found that young children at high risk for peanut allergy may be able to decrease their likelihood of the allergy by having early oral exposure. It may alter recommendations on what pediatricians advise in terms of preventing food allergies in high-risk kids (please review the study with your physician before initiating any type of exposure). This is great for those not yet inflicted, but not helpful for those of us already dealing with the allergies.
However, each time a new study is released, the food allergy parent community holds on for the backlash. Yep. The backlash. Here it comes: Tell us what we did wrong this time. Because that is what the media, the editorials and sometimes just certain individuals do. Now, we aren’t talking about the kind friend or family member that just wants to see if we heard the latest study. Here’s a sample of one of the comments from that editorial I mentioned:
“So, 10% (the cohort who showed a real allergy and not just a sensitivity) should dictate the policies to all of us? Why? That 10% need to get their kids to an allergist and attempt desensitization therapy, they need to take a regular antihistamine and they need to keep an EpiPen on hand-> problem solved. My kids have managed to get stuck in a class with one peanut kid or another for the last three years! It’s ridiculous for 30 other families to live like WE have the allergy because some helicopter Mom is too freaked out to administer daily medication. If her kid is that allergic to something then she’s being neglectful in not treating him.”
So after we got raked over the coals in the editorial for being hyperventilating, hyper-protective parents who are in danger of producing “allergic to real life” children and potentially making our children “allergic to self-sufficiency” we get to read absurd comments like the above. If either of these two individuals were at all knowledgeable about food allergies they would know that it is not as simple as just managing it with medicine. Antihistamines are not always enough and sometimes epinephrine doesn’t work. And desensitization therapy is not yet standard practice.
However, these articles and comments are commonplace. We even got pulled into the satire cartoons with the latest measles outbreaks, poking fun at requests to keep nuts out of classrooms or schools and comparing this request to parental rights to be able to send unvaccinated children to school.
Seriously? Let’s at least compare apples to apples. Food allergies are serious and considered a disability by the Americans with Disabilities Act. Parents can file a 504 plan with their child’s school to set safety parameters in place that must be followed. Yet, in trying to keep our children safe, we face ridicule. Can you imagine what the public outcry would be if individuals with obvious physical disabilities were facing this kind of scrutiny?
There seems to be this invisible line in the sand between allergy parents and some non-allergy parents. There are some very exceptional and compassionate non-allergy parents who I would never include in this group, but unfortunately, there are too many of the vocal non-allergy parents that makes this line feel real for so many of us. These are the parents that stand up and scream for their child’s right to eat peanut butter at school, however, if it was their child with the allergy, they would be screaming for everyone in the world to cease eating it. They are the ones who feel their child is being slighted because they have to deal with a food allergic child in their classroom.
Help Us Help Them
I will call us scared because we are. And we have every right to be. People die from food allergy reactions. I know because I read their stories. I study their stories. I want to know what they were allergic to, how they got exposed and if they got any medical care, as the reactions happen fast and sometimes the care comes too late. I think most food allergy parents do this as whenever someone reports on a forum that they had a reaction or had to use the EpiPen, there is a slew of questions on the specifics. We are trying to learn so that it doesn’t happen to our child.
We want our children to be safe and live to a ripe old age. We want them to have as normal a childhood as possible. Things that you take for granted are what we want for our kids. We want them to be able to go to birthday parties and eat the cake or whatever other glorious treats are offered. We want them to sit with their friends in the lunchroom and have fun while they eat. We want them to dine as everyone else at weddings. We want them to be able to go trick or treating. We want them to be able to participate in Easter egg hunts. We want them to have the option of going into any restaurant and ordering anything off the menu. We want them to be able to go to slumber parties and have fun peer experiences without a helicopter parent overhead.
We don’t want to be helicopter parents. We have to be. We see the beautiful faces of the children who have been lost to food allergies and we imagine the agony their parents have as we continue to try to navigate our child safely through their childhood. We know we could be in their shoes. One mistake is all it takes and it’s our child on the food allergy memorial website.
Here’s where I make my plea to those non-allergy parents and the community at large. We need you. We need you to be kind and try to put yourselves in our shoes.
Pretend it’s your child at risk. Think about all those scenarios above where you would have to ensure your child has safe food, but also where you help them participate because aside of the food allergy, they are just normal little kids that want to be involved with all the activities that other kids are.
There is truth to the old African proverb made famous by Hillary Clinton: “It takes a village to raise a child.” While parents are first and foremost responsible for their children, we are all responsible for creating an environment that allows children to be healthy and to thrive.
Katie VanBuren is a clinical dietitian with ProMedica Bixby and Herrick Hospitals. She has 19 years of experience, with 17 of those being with ProMedica.